Good morning and happy Friday! I hope this post finds you well :)
Here is today’s #FactFriday
It comes with a TRIGGER WARNING. This week I have written a summary of a chapter on fertility. It covers lots of sensitive subjects and some facts you may find worrying or upsetting. This may be something that interests you or you want to read but may still cause upset. If this is the case, I’d suggest reading it at a time where you have privacy and the time to digest the information.
I wanted to summarise this chapter for you as it really helped to give me a good overview; I felt reassured that others felt the same as me. And, although it was a tough read, there were many positives I chose to focus on.
My current situation is that we are desperate to start trying for our first baby again; we have in the past and have had to stop as my operation is imminent. I am now 30 and have severe DIE that has given me symptoms for 16 years and has NEVER been treated. It’s currently known to be affecting my uterus, fallopian tubes, ovaries, bowel, Pouch of Douglas, diaphragm and liver. After reading this chapter, I’m aware that I’m in the highest risk percentages for fertility problems and I’m scared that it won’t happen for us - but am desperately focusing on the positives. My mantra is ‘I’m not going to worry about that until it is a problem’. Meaning, I will keep focusing on my next steps and not worry about the things I haven’t got to yet. My next step is the first of two operations (and making the many phone calls to hurry this up! It’s been 18 months and I still don’t have a date). I’m working to improve my diet and fitness. We’re focusing on saving money and sorting the house. We are remaining a strong team moving towards our dreams together. This is obviously my personal situation and yours will be different, as will everyone’s. My point is to remind you that no matter how lost you may feel or bad things may seem, there is always something to work towards. Even if it’s not the original plan or what you initially envisioned. Keep working towards each small goal, adjusting as things move forward and seeking all the support you need along the way. Wishing you the best you amazing people
Summary of Chapter 5: Fertility from Endometriosis: The Experts Guide to Treat, Manage and Live Well with Your Symptoms. It is written by Professor Andrew Horne and Carol Pearson and published in 2018.
Although Endometriosis is associated with fertility problems, it is estimated that 60-70% of women with endometriosis are able to become pregnant without intervention. Of the remaining percentage, some are able to conceive with assistance (i.e. surgery or IVF). ‘It is important to remember that having endometriosis does not automatically mean that you will not have children – rather, it means you may have more problems getting pregnant’ (p143).
Generally, women with more severe endometriosis tend to have more trouble conceiving than women with mild disease. It is believed that endometriosis inside the ovaries can have an impact on the way the eggs are released which can affect a woman’s fertility. There are also theories that suggest the inflammation and adhesions can have an impact. The trouble is, whilst they don’t know the cause of the endometriosis itself, it’s hard to know the effect it truly has on fertility. The majority of women with endometriosis have mild disease therefore most are likely to conceive naturally.
Here are some factors that make it more likely that a woman’s fertility is affected:
Endometriomas/Chocolate Cysts – can affect egg quality or cause lower levels of egg reserves.
Deep Infiltrating Endometriosis (DIE) – can cause frozen pelvis (when the pelvic organs are stuck together)
Disease in or around the fallopian tubes – this can damage or block the tubes meaning eggs or embryos may not be able to pass through
Multiples surgeries – this is a delicate balancing act to make the endometriosis better without making the ovarian reverses lessen. It is important to thoroughly discuss the risks of surgery before it takes place.
Surgery aims to remove any endometriosis and lesions that have grown and become problematic. In women with superficial disease, this has shown to improve pregnancy rates. The removal of an endometrioma can result in and IVF specialist being more able to retrieve eggs but it can also result in the egg reserve being damaged during the procedure.
Having endometriosis increases the chance of having complications such as miscarriages or ectopic pregnancy. Even in women without endometriosis, one in five pregnancies will end in miscarriage. Although the complexities are not thoroughly understood yet, for pregnancies in women with endometriosis, the risk factor is increased to one in four pregnancies ending in miscarriage. While one miscarriage may not be considered worrying, multiple miscarriages needs to be investigated. Because of higher risk factors, women with endometriosis should be monitored more closely during their pregnancy (although there is varied interpretation of what ‘more closely monitored’ means). Miscarriages can’t be prevented however it’s important to keep in the best health possible whilst trying to conceive. Changes such as cutting out drinking and smoking as well as a healthy diet are all
advised. Miscarriage it not often talked about. It is important to seek help and support from partners, friends, family and medical staff.
Ordinarily, ectopic pregnancies are much less common affecting between 1/80 – 1/100 cases but for women with endometriosis, these chances are more than doubled. Ectopic pregnancies usually happen in the fallopian tube and cannot be sustained. They are usually treated with surgery although some are treated with medication.
Here is some information about assisted reproductive technologies (ART):
Intra-uterine insemination (IUI) - Sperm is directly inserted into the uterus to aid conception; it can also help to regulate ovulation.
In vitro fertilisation (IVF) – hormonal medicines are used to stimulate the eggs. Drugs are tailored to the needs of each person and some injections may have to be undertaken at home. It can be physically and emotionally draining. Eggs and sperm are collected and fertilised, usually in a laboratory; the embryos are left to develop, and then graded on quality. One or two embryos are then transferred into a women’s uterus.
ART shows increased rates of success within women with endometriosis however pregnancy rates for these women are still lower than those without the disease. Some people benefit from both surgery and ART treatments whilst others have to prioritise endometriosis treatment before or over fertility treatment. This can be especially tough.
At this point in the chapter we hear Amanda’s experience. She advises seeking advice from your gynaecologist before starting ART to talk about pain relief during the whole process. She also advises seeking counselling throughout the process.
Throughout the UK there are different requirements in different areas when accessing ART treatments. It can be restricted by age, previous children (of both partners), weight, smoking or reproductive health.
There are many anxieties associated with endometriosis and fertility.
Here are a few:
Time running out
That the egg can’t implant
Pain during pregnancy
Being in too much pain or too fatigued to take care of the children
If the baby will have endometriosis
Other people’s expectations for someone to have children
Strain on mental health
Strain in relationships
Potential complications and pain affecting career/job
Adoption is an option that some decide to take as their first choice although others take this option as they can’t have their own child. It can be daunting, but there is plenty of guidance and support, particularly from the government, councils and charities.
Some women choose continue to live without children which is a hugely emotional decision to make. Coming to terms with their infertility can be complicated and take a long time to accept. At Firstly, actually hearing the news is hard on its own but then having to share it with others can be traumatic. Some take a positive look on what they can do instead; such as being the best aunt they can be. Others find that no matter how many children they are in the lives of, their loss just cannot be forgotten. It can be a very hidden loss. An interviewee in the book recommends long term counselling to support the process of recovering from such devastating news.
On the other hand, lots of women with endometriosis are lucky enough to be able to conceive naturally. Many report during pregnancy that their symptoms reduce or disappear and some report a reduction of symptoms following pregnancy. Some women report that birth is not as painful as they think it’s going be as they are used to endometriosis pains!
Once periods return after birth, the endometriosis is not suppressed anymore and can ‘return with a vengeance’. It is reported that breastfeeding can reduce endometriosis symptoms and pain can potentially be more manageable for some following breastfeeding. Mum’s report that managing symptoms can be hard and there’s a lot of guilt. Seeking help from a support network is vital. One mum shares how she has to weigh up whether to take painkillers or to be there fully as a parent. There’s further discussion about managing life in chapter 7 of this book.
‘We know that, although you are more likely to have endometriosis if you have a relative with it, the genetics of endometriosis are complex and it is unlikely that a women will pass on the disease to her daughter’ (p165). One parent describes how she ensures her son is aware of the struggles women can face with this disease. Another parent is anxious that she will be highly aware when her daughter’s periods start she will be asking many questions to be able to tell if she has the disease too. Hopefully our next generation will have more awareness and knowledge about the disease and with that the necessary changes needed to have an earlier diagnosis.